Ask your questions to our Clinical Nurse Specialist Sue, who has lots of experience...
Firstly - I am soo great-full for this website as it really helped me with copying with TC.
I am just so amazed with bravery and amazing attitude of everyone here - something to admire!!
I have been diagnosed with stage 1 non-seminoma with vascular invasion - 45% relapse rate.
My oncologist gave me a choice of surveillance or taking one round of chemo ( BEP or BOP to be determined ) .
Did anyone have a similar situation ? I was wondering if there is anyone out there who decide not to take chemo and had no relapse ? I did some research and it seems most of the guys with this type of cancer had it back so I don’t understand how is this 45% rate accurate. Quite confusing to be honest.
Also - my oncologist nurse told me that one cycle of BEP will only thin my hair and if I get BOP there will be no hair loss - is that accurate ?
I know that some of you have more cycles of chemo so I am sorry if these questions come across stupid - I am just a bit confused what to do...
If roughly 50% relapse and 50% don't I'm not sure how the experience of others can inform your decision - there's a 50% chance you'll go down the other route. Likewise its far, far more common for people to come back to this site (and others) when they relapse than when they remain clear. When they relapse they need further advice and support. When they remain clear they forget about us ( a good thing!).
With BEP hair loss starts about 15 days into the first cycle. The degree of hair loss in that first cycle is individual BUT it grows back - its not a reason to avoid chemo.
I would think if you have vascular invasion, a 45% relapse risk, then its worth having the single cycle. You can view it as definitely having one cycle now versus a 45% chance of needing 3 cycles in the future, and the additional worry.
Thank you Greg,
Really appreciate your reply.
I am more inclined towards taking a single chemo cycle but as they can imagine I don’t really want to....
Do you know how usually people cope with one cycle ? Ie Do I need someone next to me 24/7 - I am a single guy, living alone so not sure how do I need to organise care/support for chemo time.
Also - what’s the average time off I will need from work ?
You'll be fine, and nobody wants the cycle, its more a matter of needing it.
One cycle: Expect to be feeling a little nauseous the first few days after - it takes a couple of days to get the meds right. You might get steroids - make sure to take them early in the day or you won't sleep. You might feel able to work, but would tire quickly so taking time off is a good idea. You'll have a dip in your immune system 7~10 days after the start of the cycle - best to avoid crowded places, snotty kids etc for a week.
I lived alone during my 3 cycles of chemo, no problems - I had the energy to go shopping etc. I would suggest you get a good supply of spicy ready meals in as you'll want something to take the chemo taste away. As you're a single chap, you might live on ready means already...?
Make sure you take your temperature everday, just to spot any infections. Avoid paracetamol as it masks temperature rises.
Make sure someone checks in on you everyday, even if its by skype (this forum counts too!). There's no need for 24/7 care - you won't be bed ridden.
I'd suggest taking a month off work, and seeing how you feel after that.
I recently finished 2 x cycles of BEP (finished 22nd May). I had the exact same diagnosis as you (non seminoma with vascular invasion). I opted for the chemo. I think now they are doing one round instead of two as standard which is great.
I had very few side effects thanks to the anti-sickness and steroids. I was pretty tired and bored in the hospital but the nurses were amazing. I'm actually writing this from the office as I am now back at work and looking forward to a trip to Lanzarote on Friday.
I really struggled with the decision bit eventually decided I wanted to do everything to reduce my odds now when I could. I also factored in things such as my current workplace sickness policy (which is great), current commitments (no kids, mortgage etc) and current location (UK so we have the amazing NHS, if it comes back in the future and working abroad may not be as good). This all led me to going for the chemo.
Remember - there is no wrong answer! Do what you feel comfortable with. This forum is a great resource so you can search through some similar posts on this decision (that is what I did). Best of luck.
Thank you - really appreciate it.
How did you feel after one cycle? Is it possible to work during the treatment from home ? At least few hours a day ?
I have just started a great new job and I am hoping I will be able to do as much as I can during the treatment - of course only if I feel strong enough to do so!
I am inclined to do the treatment as I think it’s more logical option for me, just a bit scared I guess....
I felt pretty good after one cycle just a bit of fatigue. I hope you are the same.
I would say if you feel up to it then yes you could. I probably could have but the way my job works it was more sensible to just be off completely.
Yeh I would say that fear played a big part in my decision. Once I had actually decided I felt much better!
How long did it take you to come back to work ?
Have you been able to do any exercise during the chemo ?
Did you loose all your hair after one cycle ?
Again, all of you guys are an amazing support!
I opted for one dose of carboplatin as I wanted to reduce my odds and my doctor and cancer nurse were very positive about me having it. I think the reason they pushed for it was that my doctor told me that even though the tumour or cancer had not broke out of the testicle he said that millions of cancer cells do still escape so the chemo just mops them up and stops them from making another home and growing again within the body.
I have also noticed that more people on surveillance relapse than those who do the chemo. The only side effect I had was a hard rigid vein where the cannula went in because the chemo is so cold when it goes in as it's kept in the fridge. When I had the chemo I felt fine and when I went back for my bloods they said all is normal again and it was like I had not even had it. I was 34 years old at the time and I'm nearly 41 now.
From the time of my op to the end of my treatment I had missed 10 weeks of my sport and I was back on the ice playing ice hockey again.
Everyone is different and reacts different and only you can make this decision.
I wish you all the best.
Thank you Woody - appreciate it.
I feel very greatfull for all tips and recommendations.
I have acutally decided to bite the bullet and go for one cycle of BEP.
Will inform my onco nurse about the decision and will go from there.
Any tips guys how to prepare for chemo ?
in my case I had a bit of invasion and my risk was set at 25% (1 in 4 men) to have it back .
With one adjuvant chemo treatment (Carboplatin) my risk has been reduced to 2-4% (2-4 in a 100 men).
Even though for some the above numbers seemed clear enough to take a decision, in my case I was worried about the secondary effect of chemo as well as you.
I thought long and hard and read a lot of research and comments about it and at the end I have personally decided to reduce my risk and go ahead with the Carboplatin shot.
It is very fresh for me as it happened only two months ago.
As Greg said it is a personal decision and how good you are with managing risk.
I suggest get informed and read as much as you can ONLY FROM RELIABLE SOURCES such as cancer research websites, American Cancer Association, Macmillan, Orchid, etc.
Thank you Simon. really appreciate it!
Sorry to hear of your dilemma.
I was in the exact same situation a few weeks ago.
I opted to go for 1 cycle of adjuvant BEP to bring my recurrence risk down from 40-50% to 3-4%. The side effects that you hear about and see are very daunting and this is a big battle I had. But with the advice from Greg and other lovely members of this forum, my decision was made easier.
I am currently on day 10 of my cycle and have 1 more Bleo injection next week to complete the cycle. The first few days were a bit rough (3-4 days). After that, things really do get a lot better and you start feeling a lot perkier and normal again.
Of course I have to avoid crowded places until my blood counts become normal again but general good hygiene and a bit of time away from too many people shouldn’t put you at any unnecessary risk.
In terms of hair loss, day 10 is still not showing any loss (I’m pretty much bald on top anyway but I have a beard which I have trimmed right down).
Good luck with it. You’ll be fine
Welcome to the club!
I am one month post one cycle for exactly the same as you. I would say I am now back to normal. I could have gone into work the third week but work in a hospital so needed to stay away a bit longer because of my blood counts. I am very glad I am through it and prefer 3% to 50% recurrence change.
Key thing, listen to your body, don't overdo it too soon. Then do what the rest of us do..... Ask Greg for advice!
Yep, bald but it's a good look for summer!
Best of luck buddy
A two timer!
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